I began experiencing debilitating leg pain that started in my knee and radiated to my groin. The pain was so severe I found it difficult to describe. I went to the ER where I underwent ultrasounds to check for blood clots and x-rays of my knees; however, no cause was found. Has anyone else experienced similar pain?
Hi Kathy, We certainly have to be our own advocates for healthcare…this is another example with the unexplained bleeding for your husband! I’m glad this had a happy ending with finding the 2 areas that were the culprits! You did an exemplary job with pushing for an answer!
Your last sentence is spot on! I think sometimes when we have a blood cancer or any illness, we tend attribute unexplained issues to that cause. But it’s not always so! That’s a great reminder. ☺️
Yes!, Lori, you and Kathy are absolutely right. When you have been struggling with something like MF as long as I have it is easy to blame everything that pops up on it, but the fact is I have found that I am also..... an "Old Man"........... GOSH! Perish the thought. I also have most of the other things that all older folks deal with.... it's just that they were over shadowed when my MF was really bad. I encourage everyone to stay pro-active with their situation. You don't need to second guess your doctors but you do need to follow what is being done and why it is being done. Know what the hoped for goals are and closely follow the results. By doing so, and giving this feedback to your doctor he/she has the best chance of success. Every day we are seeing new drugs and treatments that are targeted at MF and some of them are having a major impact on fighting this awful disease. MF has become survivable, so stary the course.
Good evening
I was diagnosed with primary myelofibrosis about a month ago. The bone marrow biopsy showed a genetic marker called SRSF2. This is apprently a more significant genetic marker for negative disease progression. I would like to have a BMT - but curious as I read the comments that the MDs are reluctant to do BMT unless you have significant symptoms? I would prefer to do the BMT at age 65 when I am still only experiancing anemia. Thoughts? My husband and I see our Mayo provider for the 1st time in July 2025. thank you for your help!
Good evening
I was diagnosed with primary myelofibrosis about a month ago. The bone marrow biopsy showed a genetic marker called SRSF2. This is apprently a more significant genetic marker for negative disease progression. I would like to have a BMT - but curious as I read the comments that the MDs are reluctant to do BMT unless you have significant symptoms? I would prefer to do the BMT at age 65 when I am still only experiancing anemia. Thoughts? My husband and I see our Mayo provider for the 1st time in July 2025. thank you for your help!
Like you, I was diagnosed with primary myelofibrosis but that was one month after my O/H diagnosed me with ET January 2025. I have no symptoms but do have very high platelets and somewhat high white cells. I have normal red cells so no anemia but on one lab in February 2025 on my bone marrow biopsy day my hemoglobin was a bit low, but it recovered on its own and has never been low except that lab. I take low dose aspirin daily only as I do not like the idea of Hydrea lowering all cell counts if I truly have myelofibrosis. I have CALR1 mutation but not SRSF2. I know nothing about SRSF2 and have not heard of it. I did have MGS testing. I do not have a great relationship with my O/H as I asked her for the bone marrow biopsy after she was sure I had ET and told me it was not necessary. I am 65 and chose an Advantage Medicare plan which does not have MPN specialists unfortunately. The best my O/H said she could do is send me to bone marrow transplant specialist so I have an appointment with one in early August about two and a half hours away from where I live. You are lucky to have Mayo so you can see MPN specialist. Please share what you are told when you go in July.
Good evening
I was diagnosed with primary myelofibrosis about a month ago. The bone marrow biopsy showed a genetic marker called SRSF2. This is apprently a more significant genetic marker for negative disease progression. I would like to have a BMT - but curious as I read the comments that the MDs are reluctant to do BMT unless you have significant symptoms? I would prefer to do the BMT at age 65 when I am still only experiancing anemia. Thoughts? My husband and I see our Mayo provider for the 1st time in July 2025. thank you for your help!
Welcome to Connect, @davi0937 You’re going to be in terrific hands with the hematology dept at Mayo. I confess, I’m a bit biased having gone through a bone marrow transplant at Mayo-Rochester. It’s now my home away from home but it gives me an inside perspective of the incredible care you’ll receive there.
A bone marrow transplant can be a curative option for Myelofibrosis where there’s a high probability of progression. While I was undergoing my BMT for AML (age 65), I met another woman who had her transplant a couple of weeks before me for MF. We’re still great friends, though we live a 1,000 miles apart. But here we both are, six years post transplant, healthy, active and in our early 70s. Her MF is in a durable remission.
If it’s warranted your doctor may consider your request because from what I’ve learned, the healthier and stronger you are going into transplant, recovery is generally easier and the transplant may have a better outcome.
Mayo’s transplant center is 2nd to none and filled with super heroes. ☺️
Are you all set with your patient portal? That becomes your lifeline of communication between you and your specialist and care team. You’ll be able to access it to see messages from the staff, check your appointments and see lab results
I forgot to ask, which campus will you be visiting?
Welcome to Connect, @davi0937 You’re going to be in terrific hands with the hematology dept at Mayo. I confess, I’m a bit biased having gone through a bone marrow transplant at Mayo-Rochester. It’s now my home away from home but it gives me an inside perspective of the incredible care you’ll receive there.
A bone marrow transplant can be a curative option for Myelofibrosis where there’s a high probability of progression. While I was undergoing my BMT for AML (age 65), I met another woman who had her transplant a couple of weeks before me for MF. We’re still great friends, though we live a 1,000 miles apart. But here we both are, six years post transplant, healthy, active and in our early 70s. Her MF is in a durable remission.
If it’s warranted your doctor may consider your request because from what I’ve learned, the healthier and stronger you are going into transplant, recovery is generally easier and the transplant may have a better outcome.
Mayo’s transplant center is 2nd to none and filled with super heroes. ☺️
Are you all set with your patient portal? That becomes your lifeline of communication between you and your specialist and care team. You’ll be able to access it to see messages from the staff, check your appointments and see lab results
I forgot to ask, which campus will you be visiting?
I wish I could convey how your reply gives me hope. It is a light in a dark place. The last month has been such a terrible time. I have a wonderful partner but it is still very lonely managing the emotions of a diagnosis. I live in the cities in Minnesota so will be seeing a provider in Rochester. Blessings to you for your beautiful presence here in the Connections forum.
Welcome to Connect, @davi0937 You’re going to be in terrific hands with the hematology dept at Mayo. I confess, I’m a bit biased having gone through a bone marrow transplant at Mayo-Rochester. It’s now my home away from home but it gives me an inside perspective of the incredible care you’ll receive there.
A bone marrow transplant can be a curative option for Myelofibrosis where there’s a high probability of progression. While I was undergoing my BMT for AML (age 65), I met another woman who had her transplant a couple of weeks before me for MF. We’re still great friends, though we live a 1,000 miles apart. But here we both are, six years post transplant, healthy, active and in our early 70s. Her MF is in a durable remission.
If it’s warranted your doctor may consider your request because from what I’ve learned, the healthier and stronger you are going into transplant, recovery is generally easier and the transplant may have a better outcome.
Mayo’s transplant center is 2nd to none and filled with super heroes. ☺️
Are you all set with your patient portal? That becomes your lifeline of communication between you and your specialist and care team. You’ll be able to access it to see messages from the staff, check your appointments and see lab results
I forgot to ask, which campus will you be visiting?
I understand the bmt requires a number of tests before approval for the procedure. What tests are required? I am also wondering about finding a donor, I understand there is a large marrow bank - but would like to consider using one of my children even if it’s not 100% match. Do you know if the match preference is female if the patient is female? I’m also curious if once the prep is done and the new marrow put in - are you encouraged to do anything other than be isolated? Thank you again for your help.
I understand the bmt requires a number of tests before approval for the procedure. What tests are required? I am also wondering about finding a donor, I understand there is a large marrow bank - but would like to consider using one of my children even if it’s not 100% match. Do you know if the match preference is female if the patient is female? I’m also curious if once the prep is done and the new marrow put in - are you encouraged to do anything other than be isolated? Thank you again for your help.
I know there’s a lot to take in with the prospect of a BMT. It can feel overwhelming, but honestly, once you begin the process, it all just tumbles into place and you take one day at a time.
Talk about over-whelming…I kept the pics of my schedule. There were 25 appointments in 5 days! LOL. When I looked at the portal, my first thought…out loud to my husband was, “What?? Don’t they know I’m a 65 year old woman, recovering from months of chemo? How in the heck…? 😅
Well, in the inimitable style of Mayo, which I like to call being Mayo-naised, all the tests went likety split, like clockwork!! Had plenty of resting time in between. While I was tired at the end of the day, it was invigorating and distracting!
Tests include: Pulmonary function, Muga heart scan, X-ray of chest, sinus X-ray, kidney function test, lumbar puncture, EKG, educational classes and many consults with the BMT team.
For fun, here are the pics of my schedule posted below.
Bummer…just noticed they loaded out of order!
When it comes time for selecting a donor, you can talk to your doctor about the potential for one of your children to be a match. In my case, even though I had a daughter, my doctor wanted a MUD donor…matched, unrelated. He would have used my daughter at last resort. If one of your offspring aren’t able to match, there is an international registry of 40 million + donors in the data bank. Your DNA panel will be run and the paired with whomever has the most appropriate HLA markers match.
It’s not necessary to pair by sex or blood type. My donor was a 20 year old male from the US…we’ve now aged 6 years together quite nicely. My previous blood type was B+ and my donor is O+. I now have his blood type. The HLA protein markers are key to matching.
Your last question about prep and isolation. The conditioning chemo is intended to clear any remaining cancer cells from the marrow and lymph system so that basically, your newly implanted cells will have a squeaky clean environment where they set up housekeeping with your new immune system. It can take about 10 to 20 days for your newly infused cells to engraft into the marrow. Before all that happens and until your immune system matures, you’ll be quite vulnerable to infections…viral, bacterial and fungal. So you’ll be required to wear masks all the time and be on a protocol of meds as a temporary immune system,including multiple antibiotics, an antifungal and an antiviral med, along with an anti-rejection medication, Protonix to protect your stomach and ursodial to protect your liver. This is why you’ll have a personal pharmacist on your team. Don’t panic! This is all temporary until you’re off the anti-rejection med and can start your vaccinations. Generally that starts tapering off around 3 months.
It’s important during the first 100 days to avoid exposure to illness. You’ll have educational classes to help you learn what’s acceptable and what to avoid with people, food prep, sanitation, etc. Phew…huh? You’ll have handouts, reading material, a transplant team who will bend over backwards to make sure you’re comfortable and well taken care of.
I hope this isn’t an overload for you! Please try not to let any of the information intimidate you. GVHD will be mentioned. But even in the 6 years since mine, there are improvements in treatments that greatly reduce the incidences of serious GVHD.
The closer you get to transplant, we can talk more about what to take along for your lengthy stay in Rochester and other logistics. Like I mentioned, Mayo-Rochester is my home away from home and my BMT team, 6 years later, is still is a big part of my extended family as they assured me repeatedly, that “We are ‘married for life’…and they meant it.
I hope this has been helpful to get you started…don’t hesitate to pop back in with questions or concerns.
I began experiencing debilitating leg pain that started in my knee and radiated to my groin. The pain was so severe I found it difficult to describe. I went to the ER where I underwent ultrasounds to check for blood clots and x-rays of my knees; however, no cause was found. Has anyone else experienced similar pain?
Interesting you mention this. Yes yes and yes. With it radiating to my knee conceded me because it was the one that was replaced 7 years ago. The groin pain doubled me over. Sent me to pt where I thought they were trying to kill me. It hurt so bad and worse when done. Went to pain doctor. He did mri on back and said I have the usual spine issues L5 and some others. Said he give me steroids shots ( which I do not like ) ( another story) but because my platelets are so low he said he wouldn’t do it. I was told it was bursitis by another Dr. is this a symptom with the myelofibrosis?
I know there’s a lot to take in with the prospect of a BMT. It can feel overwhelming, but honestly, once you begin the process, it all just tumbles into place and you take one day at a time.
Talk about over-whelming…I kept the pics of my schedule. There were 25 appointments in 5 days! LOL. When I looked at the portal, my first thought…out loud to my husband was, “What?? Don’t they know I’m a 65 year old woman, recovering from months of chemo? How in the heck…? 😅
Well, in the inimitable style of Mayo, which I like to call being Mayo-naised, all the tests went likety split, like clockwork!! Had plenty of resting time in between. While I was tired at the end of the day, it was invigorating and distracting!
Tests include: Pulmonary function, Muga heart scan, X-ray of chest, sinus X-ray, kidney function test, lumbar puncture, EKG, educational classes and many consults with the BMT team.
For fun, here are the pics of my schedule posted below.
Bummer…just noticed they loaded out of order!
When it comes time for selecting a donor, you can talk to your doctor about the potential for one of your children to be a match. In my case, even though I had a daughter, my doctor wanted a MUD donor…matched, unrelated. He would have used my daughter at last resort. If one of your offspring aren’t able to match, there is an international registry of 40 million + donors in the data bank. Your DNA panel will be run and the paired with whomever has the most appropriate HLA markers match.
It’s not necessary to pair by sex or blood type. My donor was a 20 year old male from the US…we’ve now aged 6 years together quite nicely. My previous blood type was B+ and my donor is O+. I now have his blood type. The HLA protein markers are key to matching.
Your last question about prep and isolation. The conditioning chemo is intended to clear any remaining cancer cells from the marrow and lymph system so that basically, your newly implanted cells will have a squeaky clean environment where they set up housekeeping with your new immune system. It can take about 10 to 20 days for your newly infused cells to engraft into the marrow. Before all that happens and until your immune system matures, you’ll be quite vulnerable to infections…viral, bacterial and fungal. So you’ll be required to wear masks all the time and be on a protocol of meds as a temporary immune system,including multiple antibiotics, an antifungal and an antiviral med, along with an anti-rejection medication, Protonix to protect your stomach and ursodial to protect your liver. This is why you’ll have a personal pharmacist on your team. Don’t panic! This is all temporary until you’re off the anti-rejection med and can start your vaccinations. Generally that starts tapering off around 3 months.
It’s important during the first 100 days to avoid exposure to illness. You’ll have educational classes to help you learn what’s acceptable and what to avoid with people, food prep, sanitation, etc. Phew…huh? You’ll have handouts, reading material, a transplant team who will bend over backwards to make sure you’re comfortable and well taken care of.
I hope this isn’t an overload for you! Please try not to let any of the information intimidate you. GVHD will be mentioned. But even in the 6 years since mine, there are improvements in treatments that greatly reduce the incidences of serious GVHD.
The closer you get to transplant, we can talk more about what to take along for your lengthy stay in Rochester and other logistics. Like I mentioned, Mayo-Rochester is my home away from home and my BMT team, 6 years later, is still is a big part of my extended family as they assured me repeatedly, that “We are ‘married for life’…and they meant it.
I hope this has been helpful to get you started…don’t hesitate to pop back in with questions or concerns.
Thank uou @loribmt! Great information. I will keep you in the loop as I hopefully get ‘Mayo-based’. Were you in the hospital after the marrow transplant for weeks? Thank you again for a n example of the schedule and information. Well informed is well armed!
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I began experiencing debilitating leg pain that started in my knee and radiated to my groin. The pain was so severe I found it difficult to describe. I went to the ER where I underwent ultrasounds to check for blood clots and x-rays of my knees; however, no cause was found. Has anyone else experienced similar pain?
Yes!, Lori, you and Kathy are absolutely right. When you have been struggling with something like MF as long as I have it is easy to blame everything that pops up on it, but the fact is I have found that I am also..... an "Old Man"........... GOSH! Perish the thought. I also have most of the other things that all older folks deal with.... it's just that they were over shadowed when my MF was really bad. I encourage everyone to stay pro-active with their situation. You don't need to second guess your doctors but you do need to follow what is being done and why it is being done. Know what the hoped for goals are and closely follow the results. By doing so, and giving this feedback to your doctor he/she has the best chance of success. Every day we are seeing new drugs and treatments that are targeted at MF and some of them are having a major impact on fighting this awful disease. MF has become survivable, so stary the course.
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Hug
3 ReactionsGood evening
I was diagnosed with primary myelofibrosis about a month ago. The bone marrow biopsy showed a genetic marker called SRSF2. This is apprently a more significant genetic marker for negative disease progression. I would like to have a BMT - but curious as I read the comments that the MDs are reluctant to do BMT unless you have significant symptoms? I would prefer to do the BMT at age 65 when I am still only experiancing anemia. Thoughts? My husband and I see our Mayo provider for the 1st time in July 2025. thank you for your help!
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Helpful -
Hug
1 ReactionHi davi0937,
Like you, I was diagnosed with primary myelofibrosis but that was one month after my O/H diagnosed me with ET January 2025. I have no symptoms but do have very high platelets and somewhat high white cells. I have normal red cells so no anemia but on one lab in February 2025 on my bone marrow biopsy day my hemoglobin was a bit low, but it recovered on its own and has never been low except that lab. I take low dose aspirin daily only as I do not like the idea of Hydrea lowering all cell counts if I truly have myelofibrosis. I have CALR1 mutation but not SRSF2. I know nothing about SRSF2 and have not heard of it. I did have MGS testing. I do not have a great relationship with my O/H as I asked her for the bone marrow biopsy after she was sure I had ET and told me it was not necessary. I am 65 and chose an Advantage Medicare plan which does not have MPN specialists unfortunately. The best my O/H said she could do is send me to bone marrow transplant specialist so I have an appointment with one in early August about two and a half hours away from where I live. You are lucky to have Mayo so you can see MPN specialist. Please share what you are told when you go in July.
Welcome to Connect, @davi0937 You’re going to be in terrific hands with the hematology dept at Mayo. I confess, I’m a bit biased having gone through a bone marrow transplant at Mayo-Rochester. It’s now my home away from home but it gives me an inside perspective of the incredible care you’ll receive there.
A bone marrow transplant can be a curative option for Myelofibrosis where there’s a high probability of progression. While I was undergoing my BMT for AML (age 65), I met another woman who had her transplant a couple of weeks before me for MF. We’re still great friends, though we live a 1,000 miles apart. But here we both are, six years post transplant, healthy, active and in our early 70s. Her MF is in a durable remission.
If it’s warranted your doctor may consider your request because from what I’ve learned, the healthier and stronger you are going into transplant, recovery is generally easier and the transplant may have a better outcome.
Mayo’s transplant center is 2nd to none and filled with super heroes. ☺️
Are you all set with your patient portal? That becomes your lifeline of communication between you and your specialist and care team. You’ll be able to access it to see messages from the staff, check your appointments and see lab results
I forgot to ask, which campus will you be visiting?
-
Like -
Helpful -
Hug
2 ReactionsI wish I could convey how your reply gives me hope. It is a light in a dark place. The last month has been such a terrible time. I have a wonderful partner but it is still very lonely managing the emotions of a diagnosis. I live in the cities in Minnesota so will be seeing a provider in Rochester. Blessings to you for your beautiful presence here in the Connections forum.
-
Like -
Helpful -
Hug
2 ReactionsThank you @loribmt
I understand the bmt requires a number of tests before approval for the procedure. What tests are required? I am also wondering about finding a donor, I understand there is a large marrow bank - but would like to consider using one of my children even if it’s not 100% match. Do you know if the match preference is female if the patient is female? I’m also curious if once the prep is done and the new marrow put in - are you encouraged to do anything other than be isolated? Thank you again for your help.
I know there’s a lot to take in with the prospect of a BMT. It can feel overwhelming, but honestly, once you begin the process, it all just tumbles into place and you take one day at a time.
Talk about over-whelming…I kept the pics of my schedule. There were 25 appointments in 5 days! LOL. When I looked at the portal, my first thought…out loud to my husband was, “What?? Don’t they know I’m a 65 year old woman, recovering from months of chemo? How in the heck…? 😅
Well, in the inimitable style of Mayo, which I like to call being Mayo-naised, all the tests went likety split, like clockwork!! Had plenty of resting time in between. While I was tired at the end of the day, it was invigorating and distracting!
Tests include: Pulmonary function, Muga heart scan, X-ray of chest, sinus X-ray, kidney function test, lumbar puncture, EKG, educational classes and many consults with the BMT team.
For fun, here are the pics of my schedule posted below.
Bummer…just noticed they loaded out of order!
When it comes time for selecting a donor, you can talk to your doctor about the potential for one of your children to be a match. In my case, even though I had a daughter, my doctor wanted a MUD donor…matched, unrelated. He would have used my daughter at last resort. If one of your offspring aren’t able to match, there is an international registry of 40 million + donors in the data bank. Your DNA panel will be run and the paired with whomever has the most appropriate HLA markers match.
It’s not necessary to pair by sex or blood type. My donor was a 20 year old male from the US…we’ve now aged 6 years together quite nicely. My previous blood type was B+ and my donor is O+. I now have his blood type. The HLA protein markers are key to matching.
Your last question about prep and isolation. The conditioning chemo is intended to clear any remaining cancer cells from the marrow and lymph system so that basically, your newly implanted cells will have a squeaky clean environment where they set up housekeeping with your new immune system. It can take about 10 to 20 days for your newly infused cells to engraft into the marrow. Before all that happens and until your immune system matures, you’ll be quite vulnerable to infections…viral, bacterial and fungal. So you’ll be required to wear masks all the time and be on a protocol of meds as a temporary immune system,including multiple antibiotics, an antifungal and an antiviral med, along with an anti-rejection medication, Protonix to protect your stomach and ursodial to protect your liver. This is why you’ll have a personal pharmacist on your team. Don’t panic! This is all temporary until you’re off the anti-rejection med and can start your vaccinations. Generally that starts tapering off around 3 months.
It’s important during the first 100 days to avoid exposure to illness. You’ll have educational classes to help you learn what’s acceptable and what to avoid with people, food prep, sanitation, etc. Phew…huh? You’ll have handouts, reading material, a transplant team who will bend over backwards to make sure you’re comfortable and well taken care of.
I hope this isn’t an overload for you! Please try not to let any of the information intimidate you. GVHD will be mentioned. But even in the 6 years since mine, there are improvements in treatments that greatly reduce the incidences of serious GVHD.
To give you a head start, here is the Caregiver guide from Mayo! Scroll down to Allogenic Stem Cell transplant: https://connect.mayoclinic.org/blog/caregivers-for-bmt-car-t-and-hematology/tab/transplant-journey/#ch-tab-navigation
The closer you get to transplant, we can talk more about what to take along for your lengthy stay in Rochester and other logistics. Like I mentioned, Mayo-Rochester is my home away from home and my BMT team, 6 years later, is still is a big part of my extended family as they assured me repeatedly, that “We are ‘married for life’…and they meant it.
I hope this has been helpful to get you started…don’t hesitate to pop back in with questions or concerns.
-
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Helpful -
Hug
2 ReactionsInteresting you mention this. Yes yes and yes. With it radiating to my knee conceded me because it was the one that was replaced 7 years ago. The groin pain doubled me over. Sent me to pt where I thought they were trying to kill me. It hurt so bad and worse when done. Went to pain doctor. He did mri on back and said I have the usual spine issues L5 and some others. Said he give me steroids shots ( which I do not like ) ( another story) but because my platelets are so low he said he wouldn’t do it. I was told it was bursitis by another Dr. is this a symptom with the myelofibrosis?
Hollie
Thank uou @loribmt! Great information. I will keep you in the loop as I hopefully get ‘Mayo-based’. Were you in the hospital after the marrow transplant for weeks? Thank you again for a n example of the schedule and information. Well informed is well armed!
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Like -
Helpful -
Hug
2 Reactions